vhl alliance

For Young Adults

Young adults (ages 19 to 34) with VHL have very different concerns from other young adults, as well as other VHL patients.


“Young adulthood” is a time of transition: from high school to college, from single life to family, from academic life to professional, from dependence to independence, and from childhood to adulthood. As if navigating these complicated transitions weren’t enough, young adults with VHL have the added responsibility of managing their ongoing care, which by itself can be a daunting task.

The VHL Alliance has created the resources and infrastructure to support the unique needs of young adults with VHL. We recognize that sometimes the best source of comfort, hope and relief can be one’s own peers who are struggling with the same issues and concerns. Through initiatives like the VHLA Young Adult Retreat and the VHLA Young Adult Mentoring Program, we strive to create a “home”, where young adults with VHL can feel safe and supported.

For more information on Independence and Transition, please check out pages 95 to 102 in the VHL Handbook.

For more information about the VHLA Young Adult Mentoring Program, please email: YoungAdults@vhl.org.